Location: Missouri
Year diagnosed with PBC: 2016

My name is Brandi. I always knew that my grandmother had a rare autoimmune disease called primary biliary cholangitis (PBC), but I was still surprised when my blood test revealed a high alkaline phosphatase (ALP) level, which is a marker for PBC.

Photos on this page by Emily Blincoe.

This is my story.

In my early 30s, I began experiencing unusually high levels of fatigue that I originally chalked up to my demanding job as the director of a nonprofit organization that helps victims of violent and sexual crimes. But after developing shingles and experiencing significant hair loss (issues that aren’t usually related to PBC), I decided to make an appointment with my doctor.

Despite my elevated liver enzymes and family history of PBC, my doctor initially ruled out PBC because I was only 32 years old. However, with further testing and evaluation, I was diagnosed with PBC when I was 34—far younger than the norm. PBC has a genetic component and, sadly, my grandmother died before I was diagnosed, so I never had a chance to talk to her about the disease we shared.

“Pay attention to your liver. In the same way that most people know their blood pressure and cholesterol numbers, I wish that everyone knew their liver numbers.” — Brandi

At first, I was devastated. I was concerned about the potential social stigma of having a liver disease. I leaned on my husband, family, and close friends for support. Now I feel optimistic about the future and welcome the opportunity to help educate women who may not be prioritizing their liver health by encouraging them to have regular liver blood screenings. These routine tests are often how people are diagnosed with PBC, since not everyone experiences symptoms until the disease has advanced.

“Ask your doctor for a liver test—you owe it to yourself and those you love to know what’s going on inside your body.” — Brandi

Today I take medication to manage my PBC and focus on living a positive and healthy lifestyle with my husband, dog, and cat by my side. I eat a clean diet and enjoy outdoor activities such as camping, swimming, and canoeing. I also take pride in maintaining the home we built from the ground up—including everything from clearing the land to laying the foundation, to insulating, carpeting, and painting every wall.

All participating parties, including patients, physicians, and experts, were compensated by ICPT.


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